This morning in the shower Anthony looked at me and asked me out of the blue,“ Why are all these people doing this for me?” I answered “because I think you inspire them buddy. Do you know what that means to inspire someone?” He said yes, then thought about it and asked for clarification. I said "you make them want to be better, and grateful for what they have. I think that you show them how to be happy because you are always so happy”. He seemed to be satisfied with that and went on to have me list all the new people that love him. This is a game we have always played when he gets down (which isn’t often). But when he is, I start listing all the people that love him and he joins in. This goes on for quite a while because the list is actually quite long. After a few minutes of it, he feels always better and goes back to being happy.
After accidentally seeing the video that’s been all over Facebook this week, he asked me about the timelines that I mention….stop walking between 8-10, arms and upper body and heart go in the teens and we will lose him between 12 and 20….” I had to explain these were timelines given to us 11 years ago and he has changed that timeline not just for himself but for many others with his participation in the clinical trial. It was a heartbreaking conversation to have with your child. I asked if he was scared and he said, yes, but lots of people love me. So we played the game.
Yesterday’s hike was awesome. We had a small crew be able to make it so I wasn’t sure how it would go, but it was great. Carrie, Jeremy and their boys came out to start filming (the Kickstarter site has reached $8,430 in less than a week). Dave brought a bunch of foam to add to Anthony’s chair so we spent quite a while in the parking lot but that’s important we do all those things now, not at the Canyon. We made good time once we started going and Anthony is learning how to ask for what he needs. He even asked Todd to get him out and stretch him when DeeDee and I weren’t keeping up.
I continue to be overwhelmed by the support and the far reaching effort this has become. Yesterday we met some great girls on the top and they took our picture. They were so moved they went home and donated. We had so many people on Facebook today already chime in that they had seen us on the trail Sunday. My wish is that their own steps became lighter as they saw us climb with our little hero. I hope that they carry positive messages into the rest of their day to all their loved ones after they come across us.
This morning when Anthony was asking about all these new people he would have to add to his love list, I realized that’s it! Just may be what it’s actually all about…. If we are truly loved in our life and have developed the full capacity to love back whole-hardheartedly, is there really anything more we need to accomplish in a lifetime? And if that’s the case, my son has accomplished more in his 14 years than most people I know, including myself. That smiling face is pure love and today I feel so blessed and truly inspired.
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